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Ageing & End of Life

Supportive Decision Making for Diverse Populations

Focusing mostly on the Canadian and American contexts, this ongoing empirical project explores what types of support patients and family members of diverse backgrounds (historical, socio-economic, cultural, linguistic, and functional) need for their healthcare decisional processes and what barriers they encounter in such processes. It explores healthcare providers', patients', and families' experience in complex healthcare decisions on: 1) initiating, withholding, or withdrawing treatment; 2) care planning; and/or 3) discharge planning. Individual interviews and focus groups seek to understand what these different stakeholders perceive as individual, (inter)professional, and system factors that might hinder, promote, or enhance support for patients/families in making complex healthcare and end-of-life decisions.

The research was conducted with Dr Jacinta Tan, a consultant psychiatrist, medical sociologist and Associate Professor at the University of Cardiff. It produced, as an interim set of findings, a public report for lay readers, entitled What Doctors Say about Care of the Dying, which is available freely on the CBmE (www.centres.sg) and Lien Foundation websites. A Chinese translation of the lay report has also been published on these sites. Media coverage was extensive, with aspects of the research receiving 19 media hits, according a Lien Foundation analysis. Apart from conference presentations and roundtables in Singapore, Hong Kong and the United Kingdom, publications include peer-reviewed articles, a lay report and online teaching resource (described below):

Development of an Online Teaching Casebook Making Difficult Decisions with Patients and Families

Singapore’s first bioethics casebook, Making Difficult Decisions with Patients and Families (available at www.bioethicscasebook.sg; ISSN 2382-6029) was launched on 19 January 2014. It was enabled by The Lien Foundation, and conceived as an educational project in response to the findings of an earlier study (also funded by the Lien Foundation), What Doctors Say About Care of the Dying, which presented issues in the provision of complex multi-professional integrated care; decision-making dilemmas in patient care across acute, community and home care settings, and uncertainty about legal rules and principles in healthcare practice. The first edition of the Casebook was developed by a partnership of the NUS Centre for Biomedical Ethics (CBmE) with The Hastings Center in New York and the Ethox Centre at the University of Oxford. An essay, lead- authored by the designer, explaining the nature of the web-based Singapore Bioethics Casebook as pedagogical and social innovation, was selected for a special issue on bioethics education by the Presidential Commission for the study of Bioethical Issues after rigorous peer reviews of more than 80 submitted papers. Publication: Moses J, Berlinger N, Dunn MC, Gusmano MK, Chin JJ. Bioethics Casebook 2.0: Using Web‐Based Design and Tools to Promote Ethical Reflection and Practice in Health Care. Hastings Center Report. 2015 Nov 1;45(6):19-25. Review by Joan McCarthy for the journal NursingEthics (June 2015 vol. 22 no. 4504-506) said:

“The obvious depth in the understanding of the healthcare system and the care taken to ensure that the “voices” and concerns of health professionals were represented indicate that the project was very well-conceived and executed. Anyone interested in undertaking a similar endeavour should not be fooled by the simplicity of the style and the accessibility of the content. To combine cultural sensitivity with global relevance is no easy achievement.”

Interview for The Straits Times (5 September, 2011) “Patients' families here 'play big role in medical decisions of the dying'” “Strong family hand in patient’s last days”

Interview for Today (5 September, 2011) “Dying patients have less say in care and treatment than their families do”

(The monograph What Doctors Say about Care of the Dying was featured in Straits Times, Lianhe Zaobao, Today, Business Times, Shin Min Daily and Lianhe Wanbao, as well as the online portals of the mentioned papers, Channel News Asia, Xinmsn and Yahoo News, with a total of 29 print, online and broadcast pick-ups, and 250 downloads from the Lien Foundation website in the first week of its release.)

Jacqueline Chin. “Disclosure: How Much to Say, and When”, Today Paper, 30 August 2012